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Doctor insights on: Alternative Treatments For Neurofibromatosis

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Help! Is it possible to have a lot of cafe au lait spots and not have neurofibromatosis?

Help! Is it possible to have a lot of cafe au lait spots and not have neurofibromatosis?

Possible: NIH diagnostic criteria for NF1 with two or more of following features:1)6 or more café-au-lait macules over 5 mm in diameter prepubertal individuals over 15 mm in greatest diameter in postpubertal..2) 2or more neurofibromas or one plexiform neurofibroma.3)Freckling in armpit or groin areas4)Optic glioma (optic nerve tumor)5) > 2 Lisch nodules(iris of eye)6)typical bone lesions 7)1deg relative nf1 ...Read more

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Dr. Gerald Mandell
160 doctors shared insights

Neurofibromatosis (Definition)

Neurofibromatosis is a genetic condition characterized by caf_ au lait spots, which are pigmented patches of skin, and benign ...Read more


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Are there any proven effective treatments for neurofibromatosis?

Are there any proven effective treatments for neurofibromatosis?

Not yet!: No cure. I would however recommend seeing a dermatologist. They can help monitor for other associated conditions in addition to the skin. There are different subsets and severities of neurofibromatosis (nf). They can help make the diagnosis, excise neurofibromas and coordinate care if needed (ophthalmology, neurology, ent, orthopedics, genetics). ...Read more

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How do i cope with neurofibromatosis ?? Is it really not curable??. Are there any treatments available??

No cure per say: There is no "cure" for neurofibromatosis and management is mostly geared at surgical resection of symptomatic tumors. There are also different variants of neurofibromatosis such as type 1 and type 2 that clinically manifest in different ways. ...Read more

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Is there a cure or treatment for neurofibromatosis?

Is there a cure or treatment for neurofibromatosis?

Neurofibromatosis: There is no cure for neurofibromatosis and the goal of treatment is to relieve symptoms. Painful cutaneous and subcutaneous tumors and those that occur on visible areas of the body may be removed surgically. Surgery also may be performed to remove schwannomas and nerve tissue tumors (neurofibromas) that cause pain, sensory loss, and loss of function. ...Read more

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What are the best ways of coping with neurofibromatosis?

Medical followup +: Regular medical checkups should be done. If you have neurologic abnormalities, get periodic examinations. Keep a positive attitude. Stay as active as you can. Think about contacting others with your problem, such as a neurofibromatosis support group (check online). ...Read more

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Can i donate plasma if I have neurofibromatosis?

Can i donate plasma if I have neurofibromatosis?

Yes if: Plasma donors should be at least 18 years of age and weigh at least 110 pounds (50 kg). Must pass two, separately administered medical examinations, a medical history screening, and testing for transmissible viruses, before their donated plasma can be used. Neurofibromatosis does not have infectious etiology. Usually genetic or spontaneous mutation causes neurofibromatosis. ...Read more

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Is there a connection between sarcoidosis and neurofibromatosis?

No: Neurofibromatosis is a genetic condition that affects patients from birth. Sarcoidosis is an acquired disease, albeit with some genetic predisposition. The two are not linked however, as far as i know. ...Read more

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I have Neurofibromatosis. Is it normal to have fluid come out of tumors?

Unusual: most are quite firm and solid. I can envision one with bleeding, infection,or necrosis having some fluid but that would be at the unusual end of the spectrum. Some other cyst also could be intermingled with a neurofibroma ...Read more

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Can neurofibromatosis patients donate blood?

Can neurofibromatosis  patients donate blood?

Yes if: Following criteria: Donors should be at least 18 years of age and weigh at least 110 pounds (50 kg). Must pass two, separately administered medical examinations, a medical history screening, and testing for transmissible viruses, before their donated plasma can be used. Neurofibromatosis does not have infectious etiology. Usually genetic or spontaneous mutation causes neurofibromatosis. ...Read more

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Is there a defective gene in neurofibromatosis?

Is there a defective gene in neurofibromatosis?

Mostly genetic: Neurofibromatosis is a mostly inherited problem or mutation with degrees involvement from mild to severe. NF t autosomal dominant pattern of inheritance. People are born with one mutated copy of the NF1 gene in each cell. In about half of cases, the altered gene is inherited from an affected parent. Remaining cases result from new mutations in the NF1 gene, ...Read more

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